Hi,
My heart goes out to your child. I got this at 3 an dit is hard when you are young. My question would be are you sure all her symtoms are RSD? Loss of feeling seem inconsistent with with a pain disorder. RSD is often a diagnosis of last resort. I would be sure to take her for at least 3 opinions with good neurologists. I would be thinking MS, and those issues if she has loss of feeling. How long has she had it??